posted
Please keep her/us in mind. We'll be heading out in an hour or so. She's having it done on her brain to perhaps find out why she has had so many seizure-like episodes and to possible check for the abnormalities in her ear canal to see why the hearing has denigrated so severely.
Results won't come back till we see the neurologist in Feb (unless there is something that catches their immediate attention).
Thanks!
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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posted
You are both in my prayers. God bless you and I hope you not only find out what is causing all of this but are also able to get help for it!
Posts: 8981 | From Illinois | Registered: May 2006
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posted
The MRI did not go well. They were getting close to the end of the without contrast portion and Silver started having (what her doctor has diagnosed as) a Myoclonic seizure (evidently it is related to types of epilepsy). She is resting now, but it hurt a lot and even though she is relaxed she still has some of the muscle jerking associated with it (Almost an hour later).
They stopped the test, but the tech said they had gotten good pics. At this point we don’t know if the neuro doc will want another test with contrast, but we will probably say, “uhhh, no”.
Praying that the episode shows in the brain scan and it will give them some info to go off of.
Thanks for the well wishes and prayers
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did they give her the special kind of ear muffs that are decibel rated, no metal parts?
Even if so, was there an intercom inside of those?
So sorry to hear about the Myoclonic seizure stuff.
Also without contrast, I had the same experience with myoclonic seizure in the MRI from the SOUND of the guy through the intercom into the earpiece they had me put in my ear to hear him - and later from the MRI, itself.
The earpiece is a very harsh thing with such sharp on & off pulses, and the guy's voice bellowing through like metal tunnel in my ear.
The seizure will not likely show on the MRI unless there is a structural component - but even then an MRI can't see everything, especially biochemical or electrical. A functional MRI might see more, though, if that was done.
If she has any kind of hyperacusis, my guess is that the Myoclonic seizure activity is related to the ears, too, as is with me.
If more images are required, I hope they do not do another MRI. IMO, anyone with any kinds of ear issues can suffer terribly from the sound, alone.
The MRI also won't show all the bone of the inner ear canals. A CT scan is better, but it has to be very specific settings. A CT scan is QUIET, if the motor for it is in an adjoining room (as is best but not always done).
I found that out after assuming my MRI should have shown any trouble with ears, but then got a specific CT scan that showed major bone trouble in ear canals. Very different pictures.
There is group that lists the exact specifications of the CT scan that shows the inner / middle ear bone structure best. If you need that in the future, let me know.
Hope her ears, and nervous - and adrenal systems can settle down from the MRI / seizures. My thoughts are with you both.
Hope the MRI results are helpful in either pinpointing something workable or ruling out some other things. Hugs to you both. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks all. Keebler - she had nice phones with music playing but they didn’t block out all of the noise of the machine. She doesn’t think they had an intercom or they didn’t use it.
She does have hyperacusis and that would be one of the things that the hearing doc was looking for. She was thinking maybe they were “startle seizures”? Hopefully, there will be something that shows a problem, but don’t know. Thanks for offering help. We’ll let you know once we find out what the test revealed.
It is interesting that her hearing doc wants to start with an MRI and said nothing about a CT and from what you said, the CT was more accurate at identifying a problem. We’ll see.
Randi - she has been tested many times for MS (1st one dated back to ’74) but all have come back as “inconclusive”.
That’s one of the frustrating things about this disease – “inconclusive” “indeterminate” “unequivocal”.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I have the myoclonus and I sympathize. the drug Keppra helped me for awhile and then I switched to clonazepam. I still get them sometimes but much much better.
Stimuli really sets me off--so, I avoid loud places.
Praying she gets answers and moves forward healthwise.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8876 | From Illinois | Registered: Aug 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just now seeing this post. Sorry slow in responding! So sorry too that she had such a rough ride!
Give her my best and tell her to feel better soon!!! Thanks for keeping us updated!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LymeNet Family >>>>>,
Thanks to all that posted, and have sent well wishes,hugs, and prayers!
Still fighting a headache, and boat rocking feeling. So not going anywhere tonight. Hoping thing will be calmer by tomorrow.
We don't have any news yet, PCP Dr. is on Vacation, and the Neuro appt, isn't 'til mid Feb. Hoping my Dr. will call when they are back from vacation [after the 1st]. Maybe they at least got my last blood test results?!
I hope each of you have a safe,Happy New Years celebration,and all of our health improves greatly.
Jus' Silverwolfi, the dizzy one
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh dizzy one,
Do you have that update yet? Hoping you get answers and are feeling better!!!
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I had a type of mini-seizure when the lyme started to get bad, after minor undiagnosed symptoms for quite a while before that. They did an EEG to document this, not an MRI.
But maybe there was a reason to do an MRI instead?
Posts: 2888 | From USA | Registered: Mar 2004
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< LymeNet Family >>>>>,
Tincup, Thanks for your kind words, still not feeling the best, and I can't seem to get my balance back. It comes and goes.
Poppy, they did an MRI because, my ENT was thinking about it for hearing loss, and nerve issues. And I will see a Neuro' in mid February.
I haven't had an EEG since 1990, so perhaps the Neuro' Dr. will have me do one. My family tends to have some odd brain issues,especially we ladies.
Moms, epilepsy, not sure what form, didn't show up in EEGm but it did in a PET scan...or SPECT ...can't remember.
My sis' was having issues, and they found some seizure activity during a sleep study, but were not able to really track it. There's a couple more women in the family that have has issues.
Then paternal grandparents both had 'Parkinsons' Disease. I have often wondered if it was Lyme disease since learning I have it.
My PCP Doc' didn't know I was ever DX'ed w/ Lyme, until late Dec. just past. We've been leery of talking w/ non LL medical staff. But at east he ordered an IGM/IGG blood test.
Hopefully we will hear something Monday... Cinderrelli's waitin' here. We had called Thursday,and they have 48 business hours to respond.
Thanks to each replier, for tho'ts, prayers, and kind words. Will update as soon as we hear,of either tests results.
Jus' Silver-Cindi-relli-wolf here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tincup sent you an e-mail - the address is Trekwannabe blah blah blah. Thanks!
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Just Silverwolfi updating what little news we have...
Just got the call for the IGG/IGM blood test, supposedly Negative, I don't have it yet but they re supposed to save it for us. [I dislike having to be on such a restricted budget that we can't go get it.]
No word on the MRI, hopefully we can get in touch w/ the Neuro Drs. people before the upcoming mid Feb. appt.. There was some odd issue,before I had the MRI, so we want to be sure where the info' went.
So still waiting,and trying to keep my balance.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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